Living with MS – Second Chances – Coni’s Story

In life you don’t often get a second chance to make up for previous missed opportunities.  Coni Stephenson is getting that chance thanks, in large part, to a decision she made three years ago regarding the treatment of her MS.  Coni was officially diagnosed with MS in June 2011, and it was a long road to arrive at that diagnosis.  Coni remembers not feeling well as far back as 2002.  During that time she couldn’t even enjoy simple things like playing with her grandchildren.  At times the entire left side of Coni’s body was numb.  She realizes now that she was probably having flares associated with MS.

Beginning in 2002 Coni became very ill and was very weak and dizzy.  Coni’s legs also felt very heavy making it difficult to walk.  Coni’s white blood count was elevated and her doctor put her on antibiotics believing it was some kind of infection.  At first, things got better but then worse again.  This went on for four months and eventually her doctor sent her to a neurologist who found spots on her MRI but no other tests indicated MS so he said Coni was depressed.  “Of course I was depressed.  I hadn’t felt very well in months,” Coni explains.

Coni never really did recover and struggled on and off for years.  In March of 2009 Coni’s mother was diagnosed with lung cancer and passed away the following month.  It was a very stressful time for Coni.  The remainder of that year Coni experienced numbness and tingling on the left side of her body frequently.  In the spring of 2010 she developed vertigo.  That fall Coni had an MRI and the results showed multiple lesions suggesting MS.  Coni was referred immediately to a neurologist and continued to see him every three months.  Her doctor at the time never did give her a MS diagnosis but, because her lumbar puncture was negative, called her condition MS suspect.  In June of 2011 it was no longer suspect.  Coni developed optic neuritis and by the time she saw the neurologist she could barely see out of her right eye.  Coni was treated with IV steroids and then Copaxone.  After the initial IV steroid treatment, Coni still didn’t feel well but she could at least function.

Coni Daughters and Granddaughters

A little over a year later, in the fall of 2012, Coni had another flare from her MS.  This time she was off balance and dizzy.  “I had issues throughout the years and I’m now sure it was caused by MS flares but I was never officially diagnosed,” she says.  Coni’s next flare came quickly after and she distinctly remembers the day.  It was March 17, 2013.  Coni again had terrible dizziness and had trouble walking on her own.  She had to go through IV steroid treatments for the third time.  “I just thought, ‘I can’t do this again,'” Coni recalls.  “Taking 1,000 milligrams of steroids a day is horrible.  I couldn’t sleep.  I developed anxiety that required me to take medication in order to function.  For the three days I am on the IV treatment I can’t work.  It is that bad.  I would have to take a full week off before I could return to work.  The steroids would help improve the symptoms almost immediately, but the side effects were horrible and I didn’t like what they did to my body.  When the steroids were stopped, I would fall into a deep depression and I just wanted to die,” Coni says.

Fortunately, Coni had some great family friends that suggested she try acupuncture to see if it could help.  Her friends believed so strongly that it would help her that they offered to pay for the treatments.  After three major flares so close together and struggling miserably with steroid treatments, Coni felt it was worth trying.  The course of Coni’s disease and treatment changed in April of 2013 when she was introduced to Katie Blair.  Katie is a licensed acupuncturist and Coni credits her with turning her life around.

Something amazing happened during Coni’s first acupuncture treatment. For years, Coni was always hot. She could never do much to cool herself down.  After the treatment was finished Coni asked Katie if she had turned the air conditioner on because for the first time in a long time she felt cool.  No adjustment had been made to the thermostat!  Coni noticed immediate improvement after only a couple of treatments.  Coni hoped the acupuncture treatments would reduce the intensity of her flare ups.  It would be a dream to not worry about having flares and wondering when the next one would occur.  Coni knew the acupuncture was making a difference in answering her prayers as she continued to feel better.

Even though the weekly acupuncture was improving her condition, Coni’s doctor continued her on Copaxone.  In July of 2013 she had a severe reaction to the drug.  “It felt like I was having a seizure only I was awake. I couldn’t get warm, was shaking and I was afraid I was going to bite my tongue,” Coni recalls.  Coni stopped taking the medication but the doctor on call felt it wasn’t a reaction.  She advised Coni to continue taking it to minimize the effects of another flare. Coni began taking it again and experienced the same symptoms.  Coni had previously talked to another MS patient that stopped taking the medication after experiencing similar issues.  Coni called the drug company’s nurse and was told her symptoms were definitely a reaction to the drug.   Coni stopped taking the drug and hasn’t taken it since.

Coni’s neurologist was not deterred and began treating her with a new oral medication.  In under a month Coni was feeling terrible from the side effects.  “I felt like my stomach was going to blow up,” she recalls.  This entire time Coni continued to receive weekly acupuncture treatments.  Coni spoke with her neurologist and they agreed to try and manage the disease with no medication.  They also scheduled a MRI in six months to make sure the disease was not progressing.  Coni was thrilled because the steroids and MS medications did a lot of bad things to her and the side effects she experienced were horrible.  After six months of only weekly acupuncture treatments, Coni had the follow up MRI and she couldn’t have been happier with the results.  The scans showed no changes to her prior MS lesions.

Coni and Grandkids

Coni was in her late forties when she first began to notice problems related to MS.  “I just pray now that if I have another flare it will be milder,” she says. “I am fortunate.  Because of the acupuncture and other changes I’ve made I can now do everything I used to do except mow my lawn.  I don’t do that because my neurologist warned me not to get too warm.  Most of my flares occurred in the summer so staying cool is important.”

Along with the acupuncture, Coni also changed much of her lifestyle and now uses all natural body products.  Coni is also making changes to her diet and the way she eats.  She is noticing a difference in how she feels as well as losing weight.  “I have been a nurse for more than 36 years and I have always believed in medicine.  I never thought much about a holistic approach but now I have a whole new outlook on it,” Coni says.

When Coni first began experiencing symptoms related to MS she was quite sick.  Coni had always been very active but had to alter all the extra things she had going on in her life.  Gone were the community meetings she had outside of work and committees she was on for her church.  She just couldn’t do them anymore.  “When I would go to work after a flare I would still be off balance at times and have to hold onto the wall to walk.  I realized quickly that I had to learn to take care of myself.  I used to take care of everyone else first.  I figured out that I wasn’t any good to anyone, including myself, if I didn’t attend to my own needs first,” Coni recalls.

MS affects each person differently.  Even though you can’t see it there are a lot of difficulties that you can’t explain unless you experience it.  “As a nurse I thought I knew what fatigue was.  Now, having to live with MS, I really know what it means.  I have been to a point where I couldn’t even walk up my steps to go to bed at night.  I don’t want other people to feel sorry for me or treat me any different.  I also realize I can’t be too serious about it either.  I make jokes about it.  If I can’t remember something I just say that thought probably landed on an MS lesion,” Coni says with a little laugh.

Coni’s family and friends did feel bad for her and the many difficulties she has gone through.  The loss of her mother was devastating, but they were there for her.  “I have been blessed with wonderful substitute mothers who have watched over and prayed for me.  I also have great family and friends.  My family and children didn’t understand the effects of MS until they saw me in a flare.  That was scary for them!  Their mom, who was always able to do everything on her own, now needed help.  I think I, like others, had some denial of the illness and hoped it would just go away.  After the second flare I realized I couldn’t deny anymore that I really had MS.  I had to figure out how to manage it.”

Coni and Son

Coni’s last MRI was a year ago.  She had no progression in the disease and her doctor thought that the lesions might be improving.  That is significant because typically treatment of MS is limited to keeping the disease from progressing rather than improving it.  “Honest to God, when Katie puts the needles in for a treatment it really works.  I’ve gone in before with numbness in my leg and when she puts the needles in my leg it will start twitching and it’s like the numbness is leaving my body,” Coni explains.  One thing Coni can’t stress enough is that if you are going to try acupuncture make sure you go to someone that is licensed.  She has also found that, in some cases, insurance covers treatments.  Coni has become an advocate in helping others seek treatment as well as helping them figure out if the treatments may be covered by insurance.  It is a way for her to give back.

Coni lives life differently now.  She listens to her body as well as her emotions.  After her second flare she decided to go on an antidepressant because the disease and the medication can bring anyone down.  “It’s OK to do that.  Sometimes it’s necessary in order to help move you in the right direction,” Coni explains.

Coni also doesn’t let anything hold her back from living a full life.  If an opportunity presents itself for trying something new she does it.  “If I feel well, I just go because I never know what may happen.  Tomorrow I may not be able to do it so I’m not going to miss an opportunity,” she says.  “I now pretty much go from the minute I get up in the morning until I go to bed at night.  Prior to seeing results with the acupuncture and feeling better I could never do that.  I just didn’t have the energy.  I am babysitting my granddaughter right now and it is great because I feel like I’m getting a second chance.  I wasn’t able to do a lot and enjoy my older grandkids as much as I wanted to because I just didn’t feel well.  Now I can do what everyone else does.  MS isn’t a death sentence.  It isn’t!  It is, however, a chronic illness and it has to be managed.”

Coni has a new appreciation for this second chance she has been given.  It has helped to lessen the debilitating affects MS has caused not only on her body but her emotional state as well.  Coni has made a lot of changes in how she treats her MS.  She takes care of herself so she can be around for all of her children, grandchildren, family and friends.  As she plays with her newest granddaughter she has renewed hope that her granddaughter will know and remember her as an active and involved grandma that loves her!

 

Be Great!  Be Strong! Be Determined!

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One Response to Living with MS – Second Chances – Coni’s Story

  1. Trudu says:

    Very interesting story. I hate steroids. I am not me at all on them.

    Like

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